How I Feel About Naps
Everyone without narcolepsy has told me how lucky I am that I can nap whenever I want.
Before my diagnosis, I would sleep well over half the day some days, and I never considered myself lucky because I couldn’t function without napping and sleeping all the time.
Since my diagnosis, I am on medications to help me stay awake. For the first year and a half, I never napped. I wanted to, but my doctor didn’t think I should be napping. In fall 2020, I went to a new doctor and he told me I should schedule a nap daily. It was weird to me, but I was willing to try it.
Will I wake up rested or even more tired?
Napping was new to me as I hadn’t napped since before my diagnosis. I was expecting it to be just like before when I used to nap, falling asleep right away. That was definitely not the case for me. Napping now seems to be never knowing how I am going to feel when I wake up.
Some days I wake up rested. Other days I wake up groggy or even more tired than before my nap. Some days I wake up feeling like I have all the energy in the world. Other days I wake up with a headache and have very little energy.
I just never know what I am going to get out of a nap. I wouldn’t consider that lucky, but that is just my opinion.
Comparing nap sleep to nighttime sleep
Since I started napping, I realize how different napping is compared to the nighttime sleep I get with Xyrem. When I lay down to nap, my body is exhausted and my eyes want to be shut, but my mind keeps going.
Most of the time, when I nap, I feel as if I am lying there half asleep because I can hear everything around me. It’s like my body chooses to keep my eyes closed but I am not fully sleeping. At the same time, though, I have had dreams that someone texted me something or someone said something, but they really didn’t.
The Xyrem effect
I didn’t learn this until recently, but it makes sense why my naps differ so much from my nighttime sleep and to why my naps were never like this before my diagnosis. Taking Xyrem has given me the deep sleep I need.
During my naps, I don’t take Xyrem, so I am not getting deep sleep. Before my diagnosis and Xyrem, my body didn’t know the difference between deep sleep and narcolepsy-sleep as it does now.
Narcolepsy doesn't feel so 'lucky'
With all of this being said, I don’t consider myself lucky that I have to nap every day. My naps are never the same and I don’t get the deep sleep that I need. Lying there half-asleep, not knowing if what you see and/or hear is real or a dream is almost more exhausting than if I were to skip my nap.
Does anyone experience similar things during their naps? Or do you have different experiences? I would love to hear in the comments!
Do you feel that others judge the severity of your narcolepsy based on how you look?